Amelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.

Monday, 19 September 2011

One decision made.....

This will be one of those blogs where lots has happened.
The last few days have made me sad, scared, worried and happy.
But today everything seems to have fallen into place.

Amelia was very sick on Friday.
Most children with croup, a cough and cold can just "ride it out".
But the way Amelia was on Friday was frightening me.
She couldn't walk, she couldn't think.
But she was still thirsty and hungry.

My difficulty was.......
At what stage does she require hospital treatment?
An A-T child's lungs can become scarred and damaged from illness.
They do not have the ability to heal like everyone else.
Every cough grated on me.
I needed it to stop.
I rang Krissy.
I rang RCH.
I rang Ashton's mum (Ash has CF).
In the end we went and saw our local GP again.
He put Amelia on a really strong penicillan medication as well as the croup liquid.
I also remembered the strong pain relief medication called "painstop" Amelia had to have a few years ago after an operation.

Now that night I was due to go and stay at mum and dad's flat in the city with some girls from Amelia's Project Committee.
Scott was insisting I still go and then the doctor agreed.
Scott is capable of giving expert care to his own daughter and I did not doubt that.
So I went.
(Scott assured me that the Painstop was extremely effective).

On Friday night I had a fantastic night.
So much food, alcohol, music and laughs.
So much laughing.
Just a really honest girls night out.
No stumbling or slurred speech, just good fun !!!
I definately felt rejuvenated from it.

Over the weekend, the decision needed to be made on the house.
What will be in everyones best interests for the future?
But mainly, which option would allow Amelia to move an electric wheelchair around freely and not limit her independence (because she cannot get to the kitchen etc).

Mark wants to renovate our bathrooms while we are in America and we did not want to waste his time.
He has managed to get tradesmen to donate their time for free AND now most of the materials are being donated.
Two bathrooms (one for bathing, one for showering) for a ridiculously small amount.

Jemimah's husband came around to give his expert opinion on whether we have the capacity to make this current home more appropriate.
His idea was.......
Imagine coming in our front door (in an electric wheelchair)and turning left into our formal lounge room. Then turn right.
From our dining room we would have one big living area right down down to the toyroom (make our pergola a room).
This would also be open to the eating area, kitchen and bedrooms.
Another way is to still turn the pergola into a room and drive Amelia to a separate entrance down the side with a ramp.
The cost of this will be similar to just paying moving costs and probably having to pay more for another house (which would still need it's own renovations).
Have you been able to keep up ??!!

So I am very content and relieved that we have made the best decision for our future home.

Amelia will have our BIG bedroom in the future with a BIG ensuite. She will have a beautiful view of the backyard and be able to go out the balcony door to possibly a deck in the future and enjoy the fresh air and sunshine.
Scott and I will move to the original master bedroom up the front of the house.

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Amelia's Project Links

About Me

Amelia is a beautiful eight year old who has recently been diagnosed with Ataxia Telangiectasia. Amelia's Project began on Facebook after Amelia was diagnosed in December 2010. My name is Amanda and I am Amelia's mum. Down this side of the page you will see "blog archives". This covers our journey from the start of Amelia's A-T diagnosis. I would like to share our journey.
Please email us at ameliasproject@yahoo.com.au